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April 30th 2011 Today we choose to focus on giving thanks and praise for all the small triumphs and graces that help us get through each day.For this is how we can survive the great onslaught of physical symptoms and the gross injustice and neglect we experience in the world; for our neurological disease, ME. When we turn to God, He can bring us through the hardest of places, when we focus inwardly we can miraculously find some sense of peace and goodness within immense suffering; not of the world. When we focus outwardly and seek union spiritually with others, we can build on hope and strength. Our prayers , joined together , transcend all difficulties and immerse us in the Kingdom of Love; God's kingdon here with us.

Lord we turn to You
and place our hearts
and minds in love.
We give thanks and praise
for all good
things that you have given us.
May we always find beauty in
each day. Amen

"Everyone is entitled to his own opinion, but not his own facts."Daniel Patrick Moynihan

I first heard that quote last night, in the shower. I thought, wow, this it so appropriate for what is going on in the ME Community.

My wife's agony-filled life is dominated not by scientific fact, but by the groundless opinion of a small group of psychiatrists. Official policy towards ME is based not on the medical literature but upon wild speculation. What we are a long-time victim of, in the ME world, is I think,succinctly summed up by Eugene Robinson in his blog today : "I'm talking about a lack of agreement on what is provably, objectively true and what is not. Political polarization is old hat. Empirical polarization is something new......The vast majority of scientists look dispassionately at the data and conclude that atmospheric warming and climate change are real. Deniers don't produce data of their own, they just say no, no, no......" http://azstarnet…

"Why are the UK patients’ support charities not vigorously refuting the false reasoning of the Wessely School about ME/CFS on every possible occasion instead of colluding with it?" Margaret Williams Grey Information about ME/CFS Help ME Circle 28th April 2011

Where are the strong voices speaking up clearly for biomedical tests and treatments for ME ? Where are the strong voices standing up for the separation of ME and CFS ? Where ate the strong voices condemning the psychosocial clinics ? Where are the strong voices suing the psychiatrists for misrepresentation , misinformation and academic misconduct ? Where are the strong voices speaking out against euthanasia ? Where are the strong voices condemning the CDC criteria and the CFS label ? Can you find one Charity doing all these things ? Can you find one Charity that m

Professor Michael Sharpe must be very fond of George Bernard Shaw; his infamous quote that people with ME are the "undeserving sick" , he claimed was from Pygmalion and here he is at it again, in his latest article,(Sharpe 2011) quoting Shaw :" George Bernard Shaw teasingly referred to America and England as two countries separated by a common language, psychiatry and neurology increasingly appear as two specialities separated by different perspectives on what is in fact a common organ; the brain."

Indeed ! If only Sharpe had expanded !! Is he, I wonder, referring to how psychiatry has become far too driven by ideology (and vested interests) ; rather than structural neuropathology ( Sabshin, M. (1990) ? What's changed, I would like to know , since Ferenczi,'s , although never having seen a patient with Tourette syndrome, suggestion in 1921 that the disease was the symbo…

The discovery that the tens of millions long-legged , bug -eyed, enormous creatures that have been pinging me , irritatingly painfully, in the face, on my early morning cycle ride, are called St Mark's Fly, has set me thinking.

St Mark , who was probably called John, came from a socially elite family and possibly the holiest home in the world, for it could well be his house where the Last Supper and Pentecost took place; yet it's how Mark spent his life accompanying Peter and recording what he said , that I so identify with this Easter morning.

I am not so much a "carer", as someone who accompanies Linda, my wife, on her lengthy, decades-long journey deep into the dry , crucified wasteland of Severe ME. How I have tried - yet to my endless frustration I cannot find the words to express the agony and torment that makes up EVERY SINGLE MOMENT of her life. I am the one who sees her wake up into agony, go to bed in agony and struggle through each day in ago…

April 23rd 2011 When we think about Easter , we cannot forget the Cross of Good Friday; the pathway that leads to the joy of the resurrection.Sometimes when we look at the Cross all we can see or think of, is pain and suffering . And we cannot always bear it. We cannot sometimes even look. However the Cross is so much more than the physical experience we see. If we look closely perhaps we can also see the humility and love of Jesus: his immense compassion and desire to heal the whole world, not just for then or for now, but for all time. We can feel his longing to help every single person who has ever lived , and all those yet to come . When we look at the Cross, let us ask to see the light , the truth, the wisdom and the power of God ,shining forth from this ultimate healing moment for all mankind. Let us ask to see and feel the wonder of Mercy , silently flowing out to touch us all, remembering that God’s Mercy flows forever and ever. When we look at Jesus with his arms open wide to rec…

Good Friday by Linda CrowhurstThe Cross is no stranger at our door. We live every day in pain and immense physical, mental and emotional distress.We hold onto Love at the centre. All is stripped away from us by the circumstances and experience of this illness; Severe ME. The pain of the Cross is very real. The sacrifice of the one who loves is immense; the carer who loves and stays despite the pain and torment he both sees and feels, is ravaged daily by the storms of the Cross. The love, the open-heart of the carer for the beloved is a wound that brings forth the greatest compassion and untold wisdom in the world of suffering. It brings clear sight of injustice and calls for the need for Truth and Integrity on the path ahead. The sufferer too lies pinioned in pain on the Cross with Christ. Each throb of pain is an onslaught and a torture. Each moment of inability, of incapacitating paralysis, breathlessness, is a moment of shared anguish with the Lord. Each second of spreading numbness, pu…

Is it just us, or does the experience of living with and caring for someone with very Severe ME mean that along the way, we are talking decades here, most people : I mean, friends, church, neighbours, charities, fellow activists, literally, stop speaking or give-up trying to reach out to you?

How little they understand of how tiny our life is.

This picture is 200 pixels; our life, I declare, feels like one, at best maybe a handful of pixels, compared to the millions of billions of pixels that make up normal living. There is not much we can do in reality to help. Get to know us and you too, most likely, will be disappointed I think.